Living Celebration of Life

On anticipatory grief

“You have months,” the oncologist said, after swiftly displaying the CT scan, bright with indiscernible red and orange blobs throughout the multi-layered image. “Years?” my dad asked as if he misheard. “Months,” the doctor repeated.

“Fuck,” I said. What else does one say in that kind of a moment? I was sitting in the small, white office with my arm around my mom’s shoulder looking across the room at my my dad seated on the medical exam chair. It was one of those unbelievable moments frozen in time, an almost out-of-body experience of derealization. I didn’t allow myself to get too far gone, since I had come prepared with a list of questions to ask about the type of cancer, different treatment options, risks and benefits, quality of life, etc. When we found out that it was probably cancer, I immediately asked my friend from grad school who happens to study coping with cancer for her recommendations about what to do, and she referred me to this resource from the National Comprehensive Cancer Network. My way of coping is seeking knowledge and I wanted to know everything. I asked my questions, many of which weren’t relevant anymore after getting the news about how advanced the stage was. The doctor said the cancer wasn’t “curable” but was “treatable” in that chemo could still be given in the hopes of extending his life. My dad said he wanted to go for it, to start fighting this thing aggressively and right away, and so we did.

Blobs

The three of us walked together to the large public waiting room before he would start his first round of chemo that same day. It was then that the tears started flowing. “I’m so glad that we were all together for my graduation in June,” I said to my dad, referencing how, in characteristic form, he went all-out when I finished my doctoral degree by renting a house in LA for my family to gather and celebrate in (unbeknownst to him it was the iconic “Darth Vader” house along the PCH that has been used in memes due to its contrast with the bubble-gum pink Barbie house next door). He wrote me a congratulatory song that he conducted my family members to sing to me, with my nieces chanting my name in the refrain and each adult singing a customized line written for them. He didn’t have formal training in music, and to my knowledge this may have been the first song he wrote, but he loved music more than almost anyone I know. We shared that love and he always took an interest in my musical endeavors with songwriting. Apparently while I was at the walk-through for the graduation ceremony, he used that window of time as dress rehearsal to practice a run through of the song. When they performed it for me, it was a complete surprise and instantly made me well up with tears. After they were done performing the song, we dug into a princess cake that my partner got from Copenhagen Pastry, known for its bright green marzipan exterior and raspberry jam interior. My dad then remembered, “We didn’t record the song!” and directed everyone to sing it again, which to be honest at the time I found a bit unnecessary as I played along watching everyone else somewhat begrudgingly oblige his request. In retrospect I’m so glad I have that memory captured on video now.

Princess Cake

---

So he liked a good party. Flashback to the waiting room after the life-altering news. Between the sobering tears, he half-way chuckled, remarking to me, “It’s not everyday that you’re told you are going to die.” He spoke to my mom and me about all of the things he wanted to do in his remaining time. People he wanted to see, places he wanted to visit. I told him that I wanted to write him a letter to express what he meant to me, and that I expected others would want to do the same. Wouldn’t he like to have a party where people could tell him? Instead of commemorating him after he was gone, wouldn’t he like to hear it while he still could?

He initially said no and wasn’t keen on sharing the details of his diagnosis with many others, at least not quite yet. I hope he would be all right with my sharing here. We moved on with the rest of the day, which mainly involved being shuffled around to different waiting rooms. Lots of time for waiting seems both apt and cruel after receiving this news. He spent the time helping me review flashcards to study for the national psychology licensing exam, just like he did when I was in middle school to memorize vocabulary, and then requested that my mom and I go out for lunch. We came back to find him listening to “My Sweet Lord” by George Harrison on repeat.

---

I went back to Los Angeles between visits to try to keep up with my regular life as best as I could. Sometime while I was away my parents decided that we would indeed throw my dad a “Living Celebration of Life” party. A date was set and we entered planning mode. It gave us something to do, a task to focus on.

Because of how extraverted my dad was, it was a multi-week-long endeavor just to organize the guest list and send out the e-vite. My childhood friend who lives in my hometown would go over to the house to help my mom organize the event - I’m grateful she served as a daughter during the times my sister and I were away. My mom worked tirelessly to select flowers, the yellow table cloths (his favorite color), pick the food, and scan family photos and organize a slideshow. My sister and mom created a program for the event, which my dad revised multiple times. My dad asked his saxophonist friend’s jazz quartet to play and my partner and me to perform two songs, an original and a cover. I created a playlist with my dad that clocked in at over 3 hours and we would listen to the songs together, humming along and deciding which ones were upbeat enough to make the cut for the party versus the more somber ones which would be played “later.” This experience was a whole other level of bittersweet.

---

I found myself experiencing heightened levels of both “positive” and “negative” emotions at the same time (quotes to reflect my belief that emotions are neither good nor bad, but just information; here I mean pleasant and unpleasant). They were so mixed that I don’t even know if defining them as pleasant and unpleasant makes sense. Each moment with my dad, and with my family while he was still alive, felt like something to savor while it was still in tact. Soak it up now while you can. I carved a pumpkin with him, nearly a month in advance, just to do our annual tradition together for the last time. We both knew it.

Last Pumpkin

I found myself googling anticipatory grief. Anticipatory grief is grieving the future, what you see coming but hasn’t happened yet. Characterized by preparing for upcoming losses, it commonly occurs for caregivers and family members of people with terminal illness like cancer or dementia, but can also apply to other situations like anticipating moving and leaving behind a place. Grief, especially when experienced in advance, is more than just sadness: it also includes deep shades of anxiety and fear. Interestingly, Jaak Panskepp, an affective neuroscientists known for his evolutionary approach to mapping the common elements of emotion across species, classifies this category of emotion as “Grief/Panic.” We freak out when separated from our loved ones since it threatens our survival. Anticipating this separation is excruciating, and made even more complex when trying to be supportive to the person who is about to lose their own life. A review on anticipatory grief in families published in The American Journal of Hospice and Palliative Medicine describes it as:

A highly stressful and ambivalent experience due to anticipation of death and relational losses, while the patient is physically present and needed of care, so family must be functional and inhibit grief expressions.

So we tried to be as functional as we knew how. I’m from a family full of planners, my dad the biggest of them all. It used to annoy me that he would try to lock down Christmas plans nearly a year in advance, making me feel like I was the spontaneous last-minute rebel in my family (even though compared to the general population I fall somewhere toward the middle of the spectrum). This time, though, planning felt as good a way as any to cope. It was an opportunity to be intentional about our time left. And even though it sometime served as a distraction by focusing on the minute details of the party and was stressful in its own right to pull off, it kept us working together and somewhat tethered to the reality of the situation.

---

The day of the event

The morning of the party he wasn’t feeling well and it was unclear whether or not he was going to be able to even attend. At that point he was struggling with intense fatigue and had difficulty walking without assistance. I was called in, as I sometimes was, to talk with him about it and try to get him to eat something. My goal was ensuring his comfort, suggesting that we could even livestream the event for him to watch from home if he didn’t feel up for it. He said he didn’t want to push it with eating (since that interacted with the nature of esophageal cancer) but was determined to attend. He had a stack of index cards he was studying with the names of guests and facts about them, such as their grandchildren’s names and hobbies. He had developed this practice to memorize things about other people by observing his own dad, a traveling salesman, do the same, and he put it to use throughout his career as well as personal life.

Highly anticipated, the actual night was surreal and chaotic. Over 200 people from all different parts of the country attended, since my parents had moved quite a bit before I was born and collected friends along the way. As people filtered in, my dad greeted them in a receiving line one by one, pushing himself to stand and shake people’s hands and ask them about their lives. That this took nearly an hour and half and completely derailed the agenda for the evening was not a surprise to me. Beforehand my mantra was “expect that something - multiple things - will go wrong!”, which seems negative but was actually freeing to relinquish perfectionism for such an intense event.

Things were a bit wacky: the bluetooth speaker with my playlist kept disconnecting; the jazz band was late and set up in a totally different room; an emotional and overly eager guest blurted out a speech at an inopportune moment. I was aware of the passage of time and my dad’s limited endurance and the impending hanger of the room as dinner kept getting delayed. Who becomes the MC of an event when the usual guy (my dad) is sick? He and my mom had already delivered courageous welcome speeches, but it was time to step up. I somehow found myself with a microphone saying “Let’s eat!” to encourage people to go to the buffet. Luckily my partner, who has a performance/theater background and is just an overall wonderful angel of a person also helped to orchestrate moving the night along.

To be honest, I was so focused on making sure things kept moving as smoothly as possible that I don’t think I really felt my own feelings about it at the time. My partner and I performed our songs, with technical difficulties and sincerity; I sat with my dad on the couch when he had to take a break; I accepted hugs and phone numbers from teary-eyed friends of my parents; I laughed with my nieces who spontaneously collected everyone’s sticker name tags on the way out and completely covered their dresses; I appreciated the steady presence of my partners’ parents’ who sat next to us; I tried to be present with other people’s pain, while they knew I must have been feeling it worse.

At the end of the night we left accomplished. We did it! We pulled it off. And just in the knick of time, as things unfortunately took a turn for the worse in the following two weeks and my dad was gone. Was it surreal? Yes. Was it messy? Sure. Was it meaningful? Absolutely. I would have done it all again.

---

Process comment:

Thank you for your patience, since it’s been a few weeks since my last post. Perhaps because this was a difficult one to write, a hard memory to delve back into. Also because there has been a lot of forward momentum in my life and planning for the future. With the coming of Spring and with the passage of time, I’ve noticed a shift from primarily wanting to look back and sit deep inside of my grief versus re-orient, re-imagine, and look forward. It’s a balancing act for sure, and the stages/trajectories of grief is a topic that I plan to dive into in my next post. I also plan to mix it up a little, still writing often about grief but perhaps also weaving in other ideas related to psychology, music, and whatever I find myself curious about. Thank you for reading and for your support.